Lymph Journal # 63 - Back from the brink

5/16/2012

Well, I’m back, back from the hardest two weeks of my life.  When all the information promises that following stem cell transplantation there will be a time of everything collapsing, well, it’s an underestimate.  I have never, ever been so hammered physically, ever come close to that from which I’ve begun to emerge.  I’ve been trying to construct the proper and accurate word picture to describe things.  I won’t be able to do it justice, but let’s try.

The nearest I can come is that I had to travel a deep, dark passageway from feeling OK to feeling, well, nothing and then on to emerging again.  Absolute weakness was probably the clearest hallmark of the passage.  I needed to crawl through but the energy spent on pushing myself six inches took all the strength I had. 

Here are some measures of that:

I haven’t read a book in two weeks – if you know my reading habits this tells a story.

For a week I couldn’t rustle up the energy to watch and DVDs – how can veg’ing seem like a monumental hurdle?

To write a one sentence email was beyond me for much of the time – Thanks to all who wrote emails of encouragement – I read them but could not respond.

Mealtimes became (and still are) a huge hurdle.  Grace was no longer asking God to bless my food, it was asking Him for the strength to swallow some.

Walking the length of my floor was exhausting (I’m now doing stairs!).

So, there I was, slowly crawling through this tunnel day after day.  And then, the tunnel collapsed.  Last Friday with virtually no immune system I got hit by some fever producing something.  It was a long day and night.  The docs were pretty concerned with talk of ICU. Infusions of antibiotics and fever reducing meds got me through the night and I feel things broke for the better in the wee hours of Saturday morning but that was not until a I had a real heart to heart with my Maker.

It’s common in Christian circles to talk of surrender to God – and that is a good thing.  We’re engaged in the long process of letting God revolutionize our lives from the inside out and may we be willing participants in that process.  But Friday night wasn’t about this or that area of my life that needed surrender, it was about my life.  For the second time in my life I had to truly surrender everything.  Once before it was when my son lay in ICU and I was beside him through the night.  In both cases I reached the point of absolute helplessness and absolute trust in God.  It wasn’t about medical care, willpower, positive thinking or dumb luck.  It was God’s call and my deal was to admit that, to welcome that and embrace the conviction that God is good. 

So my prayer was a blessing on my family and “permission” for God to do whatever.  It’s interesting that Diane was experiencing something quite similar back home at the same time.

Well, I’m still here and that is pleasing but if I was no longer on this side it would not take away from the goodness of my God.

That’s about all I have energy for right now.  I do want to give a huge shout out to my Class of 2012 students who filled a bag with get well cards.  I sat down and read them yesterday (I really couldn’t before then) and was so encouraged.  I sure do miss having had second semester with you guys.

By the way, Friday’s looking to be my Independence Day!

Lymph Journal # 62 - An old vision

5/3/2012

Today is autologous stem cell transplant day.  The past few days have been positively brilliant weather wise – the air intoxicatingly rich after overnight T-storms.  I’ve gotten outside quite a bit when untethered from the Nordic Walker and just imbibed the air.  Strangely enough, I‘ve had no signs of allergies so far this year – early days but maybe all this might have an unforeseen benefit?

Nights have not been brilliant – last night especially.  A side effect of the last chemo treatment can be real irritation in the tract running from mouth to stomach.  I consumed much ice during the treatment and that has mitigated the effects on my mouth quite effectively but the burning further down began yesterday (24 hours after treatment) and grew more uncomfortable overnight.  Added to that was the IV alarm deviously programmed to blare and flash Kein Fluss! (no flow!) whenever I approached dreamland.

Of course all this adds up to thinking time and what I began to think on was a sort of, for lack of better word, vision I once had on my way to work back at the Pier Middle School in good old Narragansett, RI.  I cannot remember if there was any particular challenge facing me at the time – I was just driving into the parking lot (usually one of the first) and backing the Toyota pickup (I miss you still) into MY spot when it came. 

It consisted of a voice, a voice that I would likely attribute to a generously proportioned, barrel chested orator of African-American roots.  This voice could speak and did peak with authority.  What the voice spoke was familiar.  In the cadence of a gifted speaker from the roots mentioned the words were those of the Twenty-Third Psalm.  That’s it.  Loud, clear, bold – as refreshing as cold water on a stifling day. I walked into school pumped for the day although truly clueless as to why I needed to hear that.  The apostle Paul’s admonition to not neglect the public reading Scripture of comes to mind – sometimes what we really need is to hear and to listen.  Sometimes we have to be loud.

Well, the voice did not return last night but memory of it did and I once more thought through the Psalm.  Here, intertwined with the King James Version are some of the thoughts that came last night.

 1The LORD is my shepherd; I shall not want. – the Almighty looks out for me with care, protection, affection, and vastly superior wisdom.  I won’t want, I don’t want, I can’t want, I will never want – not really.  Sure there are temporary limited wants but the shepherd, the Good Shepherd trumps and purely answers them all.  When I reflect on the richness I have in the Shepherd, in His intentions past present and future – how can I want?

 2He maketh me to lie down in green pastures: he leadeth me beside the still waters. I’ve seen many a green pasture over these past few months.  The green pastures of the Psalmist’s region were probably decidedly less abundant than the physical pastures I see in Germany but the metaphoric pastures can be a bit sparer in the middle of cancer treatment. But the Shepherd has plunked me down in many a pasture along the way and I have drunk of many still waters.  For a person whose mind likes to keep busy, for a person who loved the day to day of the classroom, for a person who’d rather shoot  flowing rivers that placidly paddle a lake this has been a switch.  But the Shepherd has led me to stillness many a time and it has been wonderful.

 3He restoreth my soul: he leadeth me in the paths of righteousness for his name's sake.  The Shepherd has done great works of restoration especially in the area of truly integrating what I know to be true from Scripture with what I experience as truth.  The Shepherd is good at His word.  And paths of righteousness – well the Shepherd can clear and has cleared out a lot of clutter.  There’s always room for more to go.

 4Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me.  We, all of us, are walking through the Death Valley – no choice here.  Sometimes we know it better than others. But to do so without fear – that’s the goal and we can because we follow a Shepherd that has beaten death and His guides of correction, encouragement and steerage allow us to follow well and to know that Death has lost its sting.

 5Thou preparest a table before me in the presence of mine enemies: thou anointest my head with oil; my cup runneth over.  I love the almost smug nature of this picture.  Sitting down to a great meal in the face of my enemies.  To boldly do this and then to take it a step further and be anointed and toasted beyond – this is no meek, half-heartedness on the part of a struggling shepherd – this is the GOOD Shepherd having a satisfying blast that happens to be wonderful for me as well.

 6Surely goodness and mercy shall follow me all the days of my life: and I will dwell in the house of the LORD for ever.  I SHALL NOT WANT – game, set, and match!

So, I didn’t have my “vision” last night.  It was at least eight years ago.  But now maybe I know why I did.  Don’t be afraid, in the privacy of your car, or bedroom, or walk on the beach or through the forest (be careful – to a degree - in public spaces) to make your boldest declarative stab at reciting the powerful words of Scripture.  If you don’t someone else just might!

Lymph Journal # 61 - Maybe, just maybe!

5/1/2012

Today just might be, and I certainly make it my prayer, my last day of chemotherapy – ever.  After this I’ll spend some time still hooked up to IVs but today is the last day of 6 straight days of chemo – High Dose blast-lymphoma-to-kingdom-come (where, by the way, it won’t exist!) chemo.  If the plan works, if complete healing happens this will be it, barring future bouts with some other cancer.

It’s a lovely spring morning.  The air has been freshened (outside at least as we’ll see) by last night’s storms.  It’s May 1 – a holiday in Germany – stores closed, most people off work, the traditional types in our area go hiking today.  I’m temporarily untethered from the IV pole so I hope to get a short walk in on the outside.

Today’s chemo involves a chemical that can wreck your mouth.  The solution is to chomp on ice cubes during the infusion and for a half hour afterwards.  I watched my roommate go through this few days ago.  I’m getting much advance warning from his treatment – he’s going through a stem cell transplant as well.

I’ve read the pamphlets, talked to the docs and nurses and viewed the German DVD about stem cell transplantation.  They’ve been thorough in their descriptions with one glaring exception that we picked up on reading blogs of people who have gone through this.  That exception is the smell.  After today’s chemo, I’ll have a day of “therapy pause”.  Thursday I get my own stem cells back.  Thursday I begin to stink!

Thursday I’ll smell like, of all things, a giant vat of creamed corn.  I know this because of the blogs but I know it better because my roommate got his stem cells back yesterday and it reeks of creamed corn in here.  I hope his aroma passes fairly soon because if both of us are hard at it, it will smell like cleanup day in a bad Midwestern institutional kitchen at the end of Celebrate Local Grain Week.  My body, at least resembles a side dish that one might have with vats of creamed corn. IV fluids plus cortisone have caused me to bounce up around 6kg (13.2lbs) in water weight.  I look and feel like a jello mold (albeit a tough, dry-skinned jello mold). 

But, and this for me is one big but, I have not experienced any nausea.  Wow – seems like much you ever read about in side effects involves nausea and I admit a bit of trepidation regarding it coming into High Dose but so far so good!  If they served creamed corn my record would probably break. (Never been a big fan, I only like corn chowder with lots of bacon in it but I’m real good with sweet corn). Maybe it would be nice to have a few Mid-western ribs to go with the jello and corn!

Just got back from my morning freedom walk.  Made it from the Uniklinik to the Freiburg Rathaus (Rat = advice + Hause = city/town hall) and back in forty-five minutes – not bad!  I’ve taken one anti-nausea pill and the nurse is preparing my bowl of ice so may it begin and, even better, end, really end soon!

Carl and Diane should be by soon for a holiday visit.  Thanks for your prayers.

Lymph Journal #60 Happy Birthday Diane!

4/28/2012

For those of you who know my wife Diane you will most probably agree with the following observations of what I see in her and this reflection n the anniversary oh her birth.

Diane is smart and wise – you know that is not always found in combination.

Diane is strong and tender.

She is honest and open.

She is a virtuous woman.

She is capable of great accomplishments and has proven that often.

She has demonstrated great stamina in trying circumstances over the years – now as much as ever.

She is beautiful inside and out and ever increases in this.

She is a most companionable, delightful, complementary wife and friend.

I am so grateful for the over three quarters of my life I have had in relationship with her.

Together we’re not so good in successfully celebrating these markers of life’s progress. On Diane’s birthday last year she was undergoing back surgery.  Granted, we were just back from China and Vietnam but missed any exotic Asian celebration – no it was the Gelenk-Klinik for us.  Our twentieth anniversary was spent at the Hasbro Children’s Hospital eating leftover lasagna by the window of Carl’s room overlooking a parking lot.  The nurses did score some cake for us an offered “candlelight” in the form of two flashlights draped with washcloths.  This year her birthday will consist of visiting me for a few hours here in the Uniklinik.  But she gets to attend “The Great Hallelujah” – a gospel celebration led by Danny Plett tonight for which I may have a Skype hookup.  We’ve had a few other celebration busts I won’t go into today. “Normal days” are usually pretty good.

Maybe someday we’ll do better in this department.  But our philosophy has always been that things like a marriage are way more important than a wedding and one’s living is way more important that celebrating said life.  Those things are milestones along the way but walking the way is how you get there and make any celebration meaningful.

So, Diane, thanks for the life you live with me.  It has always been an adventure and I always prefer the adventure to the slideshow afterwards.

Happy Birthday Sweetie!

Lymph Journal # 59 - A little walk, a little surgery

4/27/2012

I woke this morning after a great night’s sleep.  One truly positive thing to say about how things are done here is that once your nurse has “tucked you in” after last vitals of the day they bid you “gut Nacht” or “gut Schlaf” (Good sleep!) and refrain from interrupting said sleep until it’s time for morning (after the sun has risen) vitals.

I’ve tolerated yesterday’s chemo very well apart from a brief period when I was in no shape to operate heavy equipment.  If that is as bad as this “high dose” stuff gets we’re going to get through this well. 

I had a bit of a floorshow with my breakfast.  My roommate was getting his central line installed while I had my brötchen and coffee.  It seemed to take a little bit of time.  He may have his turn to watch me during lunch as I’m scheduled to get an extra entryway installed soon.

After breakfast the physiotherapist showed up.  He’s an Italian technician who spoke passable English (well beyond either my Deutsch or Italian).  He ran me through a set of exercises for legs, buttocks, hips, back and arms.  I now have my own stretchy ribbon of health that I can use on the hanging bar over my bed (“hanging bar” – maybe I should say, “the bar that hangs over my bed”). 

I also got out for a walk in the dangerous fresh air after I was temporarily disconnected from the IV pole. The grounds are shaping up nicely – daffodils are past it but the tulips are going strong as are the lilacs and pansies.  I found where the seemingly incongruous ducks of my first visit hang out and I made it past the train tracks to the huge cemetery nearby (OK, no smart remarks about good planning)….

(Oops, taking a break here it’s central line time and I just popped some sort of tranquilizer.)

Well, that was something I wouldn’t want to do on a daily basis.  (SPOILER ALERT – the balance of this paragraph is descriptive of a medical procedure that you may or may not wish to read).  Once the bed was reconfigured with my head at the foot (an old-school mechanical bed unlike the pushbutton one my roomie has) I got surgically draped and my head was positioned looking far left.  My Argentinian doc was doing the procedure for about the tenth time (yes, I usually ask) under the supervision of a more senior doc.  I insisted that they talk me through every step.  On the positive side, I’ve got “huge” veins in the neck – hope this bodes well for future stroke avoidance.  They snapped an ultrasound picture to prove it.  On the down side, my soft neck skin apparently has the real consistency of leather.  In a case of, “It’s cruel to be kind”, this made for a tough insertion – even after two Lidocaine shoot-ups.  My Argentinian was too gentle and the other doc stepped in with more brazen aggression to finish off the leatherworking phase.  So, it goes like this: Ultrasound location and inspection of the target, marking the skin for the entry point, needle inserted through leather and into vein (also on the tough side), wire inserted through needle, needle removed from wire, catheter “slipped” in over the wire (here was the aggressive but welcome intervention), wire removal while catheter goes further in (ultimately about 20cm/7.8 inches), sutures to hold things in place, cleanup of the area from blood etc., bandages to cover until needed and finally a trip to X-ray to check if all is OK. The target, by the way, was the interior jugular and the end result is three more hookups available for the upcoming chemo and the return of the stem cells.  All in all (minus the Xray) about an hour.

Back to the morning stroll.  It was a pleasure to smell fresh cut grass and hopefully not a health hazard.  The cemetery is enormous and, as most German cemeteries are, quite beautiful to those who enjoy riots of flowering plants and trees.  There’s always something interesting in a cemetery.  One grave with all German names had a Samurai warrior statue – hmm?  The graves of Italians are easy to spot.  They always seem to have, behind a sturdy, impervious glass cover, a photograph of the deceased on the headstone.   This kind of cemetery is not, what we call in the States, perpetual care (meaning official grounds-people see to mowing, trimming and such while frowning on and/or outright prohibiting any creativity from loved ones that make the job more difficult).  These cemeteries are more like perpetual responsibility.  Loved ones tend each plot.  They make the decisions, sometimes quite aesthetic, sometime quite eclectic, regarding what will be planted or placed on each plot.  The cemetery makes available water spigots (free water in Germany, this is a big deal), watering cans, bins in which to place trimmings, etc.  It was interesting to observe one lady biking into the cemetery with her own personal watering can in the front basket (that was sort of sweet) and a shortened twig broom strapped to the rear rack of the bike.

Last night I figured out some inside exercise.  My wing (yes, it’s mine!) runs off of a three-story atrium.  Counting 33cm tiles, I figured out that forty laps equal one kilometer.  Nordic walking is BIG in Germany.  Nordic walking is basically walking with ski poles so as to exercise the upper body at the same congruently with the bottom half.  Well, I’m perfecting the chemo version with my pole as the “Nordic Walker” (I am three-fourth Swedish). 

I did a half k and, by the time I finished it became apparent that, two floors down, a little concert was about to begin.  One guy on the cello and one gal on the accordion and vocals made up the band.  After cooling down and informing roomie of the upcoming festivities I went back and enjoyed the mix of German and French tunes until my IV started ringing and I had to report back to the Krankenschwester (sick sister aka nurse).

Waking up this morning in the light of my own situation, prefiguring a cemetery walk, and remembering the recent passing of our friend Mari Ellen I got to thinking about one truth of life for the believer.  It’s really a sort of dichotomy of what can be spoken into our life each day. 

On the one hand Jesus may say, “Lo” (because that’s how He spoke in 1611), “I am with you always, even unto the ends of the earth”.  In that case we have His presence – what that means is wrapped up in the mystery of the Trinity.  Jesus is with me, Jesus is in me?  I’m convinced that the Incarnation was God’s throwing His lot in with us forever in bodily form so, Jesus was raised in bodily form, ascended in bodily form, is standing and interceding for us in bodily form, and is coming back in bodily form.  I know God is the author of the laws of physics but how can Jesus be with me, in me while in bodily form elsewhere?  Like I said, it’s a mystery wrapped up in the Spirit’s role in the Trinity.

On the other hand He might say, “Today you will be with me in Paradise” as one crucified thief once heard.  Or as Mari Ellen must have heard, “Welcome to Paradise and on, of all days, Easter.” 

So, in Christ, on any given day one of two statements apply (well maybe not the Easter Day part).  They’re both great!

Well, just got hooked up for chemo.  Let’s get this party started.

Lymph Journal #58 - Regimen underway

4/26/2012

It’s noontime and I’m just now plugged in for the first chemical in this round of High Dose Chemo.  They’ve got some glucose running to clear the way and the toxin starts in fifteen minutes.  There will be about six days of the chemicals that make up the BEAM regimen followed by a day of  “Therapiepause” and then the stem cells make their triumphant return.  Looks like an additional hookup will be used for this, a “central line”.

Upon arrival yesterday I was quickly shipped off for another CT scan.  The results were good with only a spot or two of “regressing” lymphoma.  It’s cleared from liver, lungs, bones, etc.  Hopefully this last round blasts away anything that remains.

The doc (a female doc from Argentina whose accent in English is clearly not the usual “Denglish” we’ve come to know from living among Germans and working at English Camps) just popped in with a final warning about today’s med – Carmustin.  It is dissolved in ethanol before infusion so she wanted to let me know that I might be feeling the effects of a few drinks.  Well, it is after noon here so maybe that’s why they waited until now.

Yesterday’s check in also included the, now familiar, octopus like EKG.  I love this innovation.  If all of these tests I’ve had over he past two months had been done with old-school adhesive pickups I’d be worried about getting rid of mounds of lint stuck to my chest and ankles (rather than being continually startled by the lack of hair that characterizes them now).

I traded my first roommate in this morning for a new one.  Both were/are pretty much monolingual German speakers so I’ve had to step up my game at meal times.  Of course, one can convey many nuances of why the food is unappetizing without having to express it linguistically.  My first roommate will be coming back in fifteen days for another round of chemo so I expect we’ll meet again.  He’s also a football fan so he enjoyed watching the Munich-Madrid game last night – we both slept well with the outcome for the “home” team.

Well, “lunch” just arrived and “drinks” are about to be served via IV so I best indulge.

So, lunch was not bad – sort of a veal hamburger with gravy, noodles, broccoli and raspberry yoghurt.  I didn’t have to get out the salt-shaker I smuggled in and I even ate some of my veggies.  I know I’ve been sort of ambivalent regarding the food but this one could be gladly repeated – and that’s not just the IV talking!

Correction on the new roomie – he’s not bad in English as a former IBM software engineer retired at exactly the same time he was diagnosed with the cancer that has him here for a stem cell transplant as well.  We seem to be getting on well.

Time to kick back.

Lymph Journal # 57 - Endgame's Eve

4/24/2012

Tomorrow is, I hope, the beginning of the end.  I’m scheduled to enter the Uniklinik Freiburg for the last step in the autologous stem cell transplant process.  I guess I am as ready as I can be.  I’ve read up on the procedure from both the scientific and experiential points of view.  There’s only so much you really want to read heading into something like this.  The clinical stuff is OK except when your attention is drawn to the failures that can happen in the process and reading the experiences of fellow bloggers that have gone through this has the potential to get you imagining all the tough parts they experienced happening to you.  So, I’ve read enough.  Up to this point in the various phases of treatment the experiences have never been nearly as dire as one would imagine from reading such material so I hope this holds true for this chapter.

I’ve downloaded loads of reading into the Kindle.  If I run out on chemo brain it will either be a miracle of awareness or I won’t really have read well at all – either way I’ve got stuff to read – always important.

Most importantly, I’m still confident and aware of the sheer mass of people that are praying for me and for us.  It means everything.  I know that God has heard and that whatever lies ahead is fully bathed in the prayers of the saints and is ordained in the will of God – so, what’s to fear?

I’ll tell you what’s to fear – 21 days of hospital food!  Strangely, it’s the one fear that I do not have peace over yet – how stupid is that?

For those of you that wish to dig further into the technical aspect of the treatment I’m about to undergo (BEAM chemo, transplant, and recovery of blood cells) here’s a fairly comprehensive website: <http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Chemotherapy/Combinationregimen/BEAM.aspx>

I’ll be hospitalized throughout the chemo and the recovery of blood levels – approximately 21 days.

For my last supper I’ll be grilling steak (a rare treat here in Germany due to high prices for good beef) and we’ll finish the second half of last night’s strawberry-rhubarb pie.  There will be the odd vegetable as well.

So, thank you for your prayers on my behalf.  Please continue to hold up the family in prayer.  Diane has been so wonderful through all this but has a very busy few work weeks ahead and will have to balance out home and hospital with this.  Pray for her strength and physical well being throughout.  Pray for the kids as well, both near and far, pray that they would know God’s peace through all this.